Just because we can do something, should we?

Linda Dahlstrom MSNBC.com Health editor • E-mail

Face transplants, human cloning, embryo "adoption," paying someone to donate an organ ... life in the new century is full of ethical quandaries never faced before in history. And they're all topics Art Caplan has an opinion on.

Caplan, director of the Center for Bioethics at the University of Pennsylvania and an MSNBC.com contributor, wades into the gray area between what science can do — and what it should do, in his newest book "Smart Mice, Not-So-Smart People" (Rowman & Littlefield).

In the wake of the election that will almost certainly alter the future of much-debated stem cell research, Caplan paused to answer questions:

Q: What is the single most important bioethical dilemma faced in the U.S. today?

A: The biggest bioethical challenge America faces is the failure to guarantee access to decent health care to every American. We do not have, as some politicians and representatives of the health care industry often assert, the finest health care system in the world. We have no system. We have a patchwork mess that is inefficient, costly and highly susceptible to preventable errors and mistakes.

We lack any serious public program aimed at paying for mental health care or long-term care. The American people should not tolerate this situation. Whatever one's political beliefs, it is ethically incumbent on us to protect, support and empower the sick, ill and vulnerable in our society. The reality that there are American children who lack adequate pediatric care, mental health care, dental care, eye care and support for coping with disabilities is a grave, grave ethical failure.

Q: What kinds of medical ethical conundrums do you see today as opposed to 10 years ago?

A: One of the trends I comment on in "Smart Mice, Not-So-Smart People" is that technology is moving in biomedicine at an incredibly fast pace on many different fronts. Ten years ago, bioethics was dealing with the last-gasp technologies produced by mid-20th century research — the ICU, the blockbuster drug, the dialysis machine. That is no longer the case.

Investments in genomics, the neurosciences, bioengineering, nanotechnology, genetic engineering, bioagriculture and imaging technologies are starting to produce. It is very clear that the 21st century will be the age of the life sciences where new knowledge of our genes, brains and physiology will confront us with incredible choices and challenges.

The first hints of the ethical fallout from progress in the life sciences are all around us — cloning, deep brain implants to fight Parkinson's disease, genetically engineered food, nanomedicines, embryo biopsies, creating synthetic viruses, medicines targeted at people with particular genotypes, growing organs to replace damaged ones, drugs that allow us to stay awake longer or to build blood cells faster. How we respond to these emerging technologies will put patterns in place that will determine the options and limits that govern the lives of our children and grandchildren. Who gets access to these technologies, what people can choose to do with them, how business and governments around the world promote, regulate, pay for and prohibit them are among the biggest ethical challenges that face us in the years to come.

Q: Technology has made it possible for seriously ill people to live far longer than they used to. But how should quality vs. quantity of life be weighed?

A: As the Terri Schiavo case made abundantly clear, we do not have a consensus in American society about what makes life worth living or who should make that decision for someone who cannot do so themselves. This uncertainty extends to other nations as well. It is reflected in different attitudes towards permitting physician-assisted suicide, rationing of expensive medical technologies and the efforts that comparably wealthy nations are willing to make to try and rescue children born with severe congenital disabilities or, elderly persons with dementing illnesses like Alzheimer's. It is hard to imagine an Ariel Sharon being kept alive by technology, as he has been in Israel, with the amount of devastating brain damage and complications he suffered from his massive stroke in say Sweden, Singapore, Canada or even California.

I think and try to argue as passionately as I can in "Smart Mice" that quality of life must be taken into account in making life and death decisions — whether it is for your mother or by society deciding how much money to spend on the dying. The point of medicine is not to preserve biological life but to restore fundamental human capacities — cognition, emotion, mobility and human interactivity. It strikes me as nothing short of cruel to argue that quality of life will not be considered an appropriate part of deliberations about when to forgo life-extending care and treatments or to stop them.

Q: Can you talk about a medical ethical dilemma you've faced in your own life or family? What was it and how did you resolve it?

A: I think the hardest dilemma I faced was my battle with polio when I was a young child. I don't bring this experience up very often except when asked outright since I don't want to use personal experience as giving my views any special credibility or standing.

Two things stuck in my mind about being a paralyzed 7 year old in a Boston hospital. One was that no one would tell me the truth about what I had. The other is that when there is no cure and no fancy technology our health care system is at a loss about what to do with a person who is ill — physically or mentally. It was true then and it remains true, sadly, today. I could not resolve those problems at the time. But even as a kid they made me mad.

As a result of that experience, I have tried to be vigilant about insuring that every American, child or adult, has the right to know the basic facts about their disease and its prognosis if they want to know them. And despite the fact that I have a bit of a reputation for being fascinated by the technological side of biomedicine — a preference I will admit is true — I have tried hard in my writings and lectures to not forget the moral challenges involved in chronic illness, long-term care and rehabilitation. Our health care expenditures and public programs are skewed way too far toward acute illnesses and hi-tech diagnosis while leaving these fundamental areas of health care unjustly impoverished.

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